New Year’s Resolutions for Tourette Syndrome

As we count down the hours, minutes and seconds to 2012 and a New Year, we thought it would be appropriate to think about ways we hope 2012 will be a different, better year in the Tourette Syndrome community — for individuals and families alike.

What research do you want to see take place?
What scientific breakthroughs do you believe are possible?
What are some of your family or individual goals relating to TS?
How do you expect TS to affect you in 2012?

Those are just a few of the questions we would love to see addressed as we usher in 2012. Please consider taking a moment or two to ponder this issue and leave your response in the comments section, or — if you feel led — make a post of your own about it. It’s up to you!

We look forward to hearing from you, and have a safe, happy and prosperous New Year!

Daily Tourette Syndrome Links: Wednesday, Dec. 28

Here are today’s Tourette Syndrome-related links from websites all over the Internet. Some days will have just one or two links, while others will have a whole bunch. This is just another way we hope to help the parents of the TS community. Also, we are looking for more parent contributions. We would love to hear from you! Thanks!

Tourette’s victim delivering Christmas presents when bike was stolen

The Great Wall of Tics

Author launches book “To Live and Learn with Neurological Conditions”

Blog: High-frequency stimulation eliminates tic-related acitivity

2012 National Tourette Conferences

Making sense of Tourette’s

 

Daily Tourette Syndrome Links: Tuesday, Dec. 27

Here are today’s Tourette Syndrome-related links from websites all over the Internet. Some days will have just one or two links, while others will have a whole bunch. This is just another way we hope to help the parents of the TS community. Enjoy, and please give us feedback. Thanks!

Clinical trials for Tourette Syndrome

Tourette’s sufferer “cured” by “brain pacemaker”

Tourette Syndrome and Trial: A new TS Facebook page

How to put a stop to facial, vocal and body tics

Is Risperidone really worth taking the risk?

A TS clinical trial at New Jersey’s Overlook Medical Center

 

Merry Christmas and Happy Holidays from TSParentsOnline!

On behalf of the entire staff and network of board members, presenters and volunteers that make the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) what it is, I would like to wish a very Merry Christmas and Happy Holidays to all of the contributors and readers who have helped make the TSParentsOnline blog a rousing success over the first two months of its existence.

We already have received several thousands of page hits from all over the world — England, Belgium, the Netherlands, Canada, Denmark, France, Spain and Indonesia, among others — on our posts and comments. That might not sound like a lot in the grand scheme of things, but for a fairly new blog by an organization our size, it is a tremendous — even positively overwhelming! — response.

In the next few weeks and months, we expect the blog to continue to grow — especially after receiving several submissions from otherwise published authors who already have successful blogs of their own. Be sure to check out our links section and give them a shout-out on their pages!

We would love to double our already sizable contributor list, and all we need to bring that to fruition is to hear from you, the parents! So if you are interested in participating in the TSParentsOnline blog, please drop us a note today by e-mailing parents@njcts.org.

There’s nothing quite like being part of a community that is doing something big to help others, especially those in the Tourette Syndrome community — for which there just aren’t that many resources outside of the magnificent ones NJCTS provides.

So what are you waiting for? Open up your e-mail browser and drop us a line. We would love to hear from you. And after that, go join your family, open some presents, reflect on what this season means to you and get ready for an even better 2012!

Happy Holidays!

Jeff Weber
TSParentsOnline Blog Administrator
parents@njcts.org

Bean bag chair gift hasn’t been a flop

Attention TS parents: What gifts have you bought for your TS children this holiday season? We would like to know? E-mail us at parents@njcts.org or, if you are signed up to post, just leave us an entry about your special holiday gift!

I finally bought my son a bean bag chair.  He was constantly flopping onto the couch, jumping up, then flopping back down, etc. I know he can’t help it (or some of it) and occasionally, I must admit, I ask him to stop. Sometimes you just don’t know what he can’t control and what he can.

We celebrated with part of our family, and he loves his oversize chair.  He can flop all he wants now — well, to an extent.  He has not flopped on the couch in days.  Let’s hope the bean bag chair holds up well.

Daily Tourette Syndrome Links: Wednesday, Dec. 21

Here are today’s Tourette Syndrome-related links from websites all over the Internet. Some days will have just one or two links, while others will have a whole bunch. This is just another way we hope to help the parents of the TS community. Enjoy, and please give us feedback. Thanks!

Sex and Disabilities: Do you know how to communicate?

Bill would make homeowners associations comply with disabilities act

School committee approves therapeutic support program

Tourette Syndrome in the classroom

Exploring Tourette’s through dance and diagnosis

 

Homeschooling by default

Ah, rejection – our constant companion over the years.

Several weeks ago, I posted about our decision to homeschool.  As I wrote at the time, it has been a challenging path, even if, overall, it has been the “least-worst” option.  Well, it has been the least-worst option for O, but I am not sure that it has been the least-worst option for me.

Homeschooling O has taken a real toll on my mental and physical health.  As a result, on several occasions I have tried to place O in public or private schools, never with positive outcomes.  This has been very frustrating, especially when it has seemed that my choice has been to put the boy in school or put myself in the hospital.

We first tried to put O, who is profoundly gifted, into a private school for gifted children.  The school’s curriculum was good but far from enough to meet O’s needs without drastic modifications.  I asked for those modifications, and was told “Well, Mrs. G., you do realize that all of our students are gifted, don’t you??” Continue reading

Daily Tourette Syndrome Links: Tuesday, Dec. 20

Here are today’s Tourette Syndrome-related links from websites all over the Internet. Some days will have just one or two links, while others will have a whole bunch. This is just another way we hope to help the parents of the TS community. Enjoy, and please give us feedback. Thanks!

Video: Girl with Tourette Syndrome

Yahoo! Answers links to helpful TS information

Tourette Syndrome Foundation of Canada Forum

I May Have Tourette Syndrome: A list of famous people with TS

Family contends with PANDAS (associated disorder of Tourette)

 

Doing the Mendham Walk for TS out of self-pity

When we decided to do the New Jersey Walks For TS event Nov. 19 in Mendham as an extended family on behalf of Ethan, age 10, we had two goals in mind: We wanted to raise money for NJCTS, which had done so much to support us, and to show Ethan he’s not alone in his struggle with TS.

For the past few years, he’s been caught in a cycle of “Poor me, I have Tourette’s” and “It stinks to be me”  victimhood.  While these may be developmentally appropriate and normal stages along the course to acceptance, they are incompatible with any progress in therapy or getting at least a little control over the “tics of the mind” that consume our every waking minute.

During the days leading up to the Mendham Walk, Ethan began checking the website on a daily basis to see how much money we had raised for the cause, and he began to ask questions such as what NJCTS uses the money for and why people even did walks in the first place. Continue reading

Daily Tourette Syndrome Links: Monday, Dec. 19

Here are today’s Tourette Syndrome-related links from websites all over the Internet. Some days will have just one or two links, while others will have a whole bunch. This is just another way we hope to help the parents of the TS community. Enjoy, and please give us feedback. Thanks!

Growing family keeps tradition alive

Reader comments more civil on Facebook

A Tourette Syndrome webinar

Tourette Syndrome information for parents

More general, but always helpful, TS information

Tourette Syndrome Alliance hopes grant gives new start

Tourette Syndrome Online Support Forums